Monday, December 29, 2014

To have surgery, or not to have surgery?

This is a very big deal for patients that are diagnosed with a Brainstem Cavernoma. Not only most of us are told Inoperable right off the bat and get used to the idea, but IF we end up, like I did, finding a Neurosurgeon that has a different opinion and suggest the surgery, it is not only new territory and scary, but brings us a whole new ball game of decisions.  There seem to be NO good decision.

Damned if you do, damned if you don't. 

These are exactly the words that Dr.Spetzler assistant told me over the phone when he called with an opinion after reviewing my MRI's. 

If only there was a way to know what is best to do.  Wait and see, or just put it all in the balance, hope for the best, and have the surgery?  Each and everyone of us is different. Our Cavernoma are different. 

I have spent the last 2 years doing a lot of research on this.  The best research sources being people. Real people, with real experiences. I took a lot of screenshots, a lot of pictures, a lot of notes. I made lists and changed them  as I learned more, and as data changed.   

I am NOT a doctor, and I do NOT want anybody to read this post as if it is from a medical book. However,  I found very important to let you know of my findings, which are nothing extraordinary, but these are details that do play a role in deciding if surgery is a risk you want to take.  I think 2 years and several dozens of people later, I can confidently share what I have found, and the patterns I have discovered.

Also, keep in mind that these patients had surgery by surgeons who were confident in their outcomes and none of these surgeries were emergency surgeries. They were all planned, since there are from people who CHOSE the surgery, which make a big difference.  Having emergency surgery on your brainstem is very, very bad news from most neurosurgeons!  This simply means that you had a severe hemorrhage and whether the surgeon was fully skilled to access the brainstem or not, he had to in order to save your life.

Here is what I have observed when it comes to brainstem bleeds. Surgery is NEVER considered if someone never had a bleed. Its very common for a surgeon to not consider surgery unless there was at least 2 bleeds. Especially if these 2 bleeds were not too far apart. I will probably repeat most of these things when I talk about not choosing surgery, because if you do not have surgery, and you have more bleeds, this will apply.

  • If you were referred to a neurosurgeon upon finding out you have a brainstem CM, it is most likely because it HAS bled.  However, most neurologists dont know much about CM, and may refer you to a surgeon anyway. 
  • For the people who have the genetic kind, which usually mean they have more than one, the brainstem lesions seem to be the one who bleeds or causes problems. How cruel is that?
  • If someone bled one time in the past, and it has been quite a few years since, the cavernoma is less likely to ever bleed again as opposed to a person who have already had a second bleed.  
  • The bleeds seem to  happen closer to each other than the last, either being 3 years apart, than 2 years later, or 18 months apart, than 9 months, than 6 months.  It seems to never fail. 
  • The deficits from the bleeds come back every time, but usually more intense and severe each time. Some you recover from, some you don't. 
  • Every new bleeds brings not only bring more symptoms, more intense, but some of the deficits you have recovered completely before, takes longer each time, or even stay.

Now, surgery, or not surgery? Ahhh hard decision to make!! 


Many have not had surgery simply because their brainstem cavernoma never bled or/and caused symptoms.  The CM was either found by "accident", because they never really had symptoms, or symptoms did indeed developed.  A CM does not have to have bled to cause symptoms.  Now, these symptoms are usually not life threatening. They are mostly a "pain in the ass" as we say.  The pressure of a cavernoma can cause some dizziness, painful daily headaches among other things. Only an MRI with AND without contrast can show if you have had a bleed. A CT scan will NOT!!  It is so aggravating for me to read on my support group things like "I cant walk, I am so numb, but ER doctor said No bleed from the CT". Makes me so mad, and sad, and helpless!!   Going according to your symptoms is not going to tell you if you had a bleed either.  You need a MRI with and without contrast.  

Once you are diagnosed, if a MRI shows that it never bled, you will be told that the best thing to do is to monitor it by having an MRI once a year. Your surgeon will determine how often he does believe a MRI is needed.  To do surgery on a brainstem CM that never bled is never going to be suggested simply because it would be like breaking a perfectly fine leg, put rods in it, to avoid having to do it one day? Giving you now issues that you would never have if you never break your leg.

If you bled once, it is most likely that you will be told that monitoring is the best way to go also.  From the "data" I collected, about half the people who had a cavernoma bleed once, didn't have another bleed, and half went on to have a second bleed.  The longer it has been since your first bleed, the more chance you have for it to not bleed again.  For example, a woman had a bleed when she was 32. She is 71 now, and never had a bleed again.  However, she does suffer from daily headaches and her right side is numb from that bleeds decades ago. BUT it never bled again!  On the other hand, another lady had a bleed in her early 20's, and a second one 5 years later.

That brings us to when surgery becomes an option, is that the best option? or is leaving it alone in hopes it does not bleed again better?

Here is what I observed when it comes to people who chose not to have surgery (after 2 bleeds ore more) (I personally struggled between having surgery or not after my second one. I have not yet made my decision when I had my third and worse one yet, who left me with the difficulty to swallow, breathe, and barely feeling my legs, which made it very hard to walk.....)

  • People with hereditary cavernomas may have had surger(ies) to remove symptomatic/bleeding lesions in other locations of the brain, but choose to leave the brainstem alone.
  • It goes like this :  You have a bleed, which by the way, is an hemorrhagic stroke. Time (usually months) spent recovering. Recovery is usually partial (left with some deficits, mild or severe depending on the severity of the stroke)   Every bleed led to a  little longer recovery either recovery  was partial or complete. Bleeds seem to affect the same ways each time, but each time seems to take longer to recover. 
  • The bleeds get closer together. No matter what.  100% of people I know who had 2 bleeds or more, had them closer each time. If it is not a big bleed, its micro bleeds, which mean your CM "drips" blood pretty much all the time. For bigger bleeds, usually leaving permanent deficits, once they reach a second bleed, a third one usually follow closer after the second one than between the first and second one.  For example, it could be: "Bleed. 10 y later a second one. 6 y later a third one."  Or "Bleed, 18 months a second one, 11 months a third one" (these were mine)  Or even "Bleed, 8 months later a second one.  2 months later a third one"  It seems to simply never fail. 
  • There is always that chance that it may not bleed again!!  I have met several people who only bled once, years and years ago.  It is once you reach the "second bleed" club that the ball change.  However, I was told that once it become active as of microbleeds or 2-3 bleeds, you only have 1% chance of it to just become inactive and never bleed again. 
  • People live in fear of "will it bleed today?"
  • 100% of brainstem bleed survivors are left with "some" deficits/change.  
  • Those deficits/changes may or may not affect your quality of life.
  • Knowing that the surgery is most likely to  bring you more deficits/changes than you have now, in order to avoid future disaster, is still a very hard pill to swallow.  
This bring me to choosing surgery. I have said it before.... the choice given reminded me of some Doctor House show where the patients is given one of those "You cant win" decision to make.  I never thought these existed in "real life"!   I was wrong, because there are a lot of medical conditions that are so severe, that the choices given to deal with them, one way or the other, seem to just not bring a "solution", but just basically letting you choose which way you want to go thru this nightmare, leaving you "some" control.    For me, it came down to my children.  I simply realized that they would prefer visiting me in a nursing home now, than a grave yard tomorrow.   Because I had more guarantee that this thing was going to kill me sooner than later, but didnt know when; could be today, could be in 2 years, but at least, getting rid of it today, was giving me at least "some" guarantee that my children would have me around, somehow.  There are no words to describe how it feel to just throw yourself in what seemed to be "the lion's den". I was told such horrible scenario by my local neurosurgeons, that of course I got myself ready to live the rest of my life severely handicapped.  It was a grieving process.  However, finding a confident neurosurgeons, who has done this several times before, makes ALL the difference in the world!    (Click HERE to see a list of neurosurgeons who have good success operating the brainstem) 

Okay, enough rambling... here is what I learned is very typical when it comes to surgery. 

  • People who have had the surgery all except one, woke up with more deficits than they had before the surgery. 
  • These deficits were in general much like the one caused by a bleed, but amplified. For example, my vertigo was out of this world, I could hardly hear, and I couldnt feel my entire body after surgery, as opposed to being dizzy, having "some" hearing loss, and only my left side numb.  
  • People also woke up with completely new issues/deficits. The deficits that people woke up with that they never experienced from a bleed have 2 categories.
    1)The ones that get better every day, or at least consistantly. These, people have recovered completely from.
    2)The ones that seems to have not improve, or so slowly that you just know it will be a long term thing, or permanent.
  • The deficits that people woke up with that were "just" an amplified version of their "already there" symptoms/deficits, were the ones most recovered from, the fastest.  
  • A lot of the symptoms brought on by a bleeding cavernoma that you dealt with and got better over time, were gone shortly after surgery. 
  • People living with micro bleeds, all my symptoms from that were gone instantly. 
  • For the deficits brought on by the bleeds, most people only recover to the point that these deficits were before surgery.  So basically the way they went in for surgery. However, some symptoms do get better: 
  • Numbness seems to have improved after surgery
  • Dizziness seems to have improved after surgery
  • Two people who had seizures did not have seizures again.  
  • The better a person is doing going in the surgery, the better the outcome. 
  • The worse (more symptoms, deficits) a person is doing going in the surgery, the harder it is.   In other words, if you have recovered from your last bleed completely, deficits will be less, and recovery faster, than if you are dealing with lots of symptoms right now. 
  • All in all, deficits from bleeds are most likely to be long term and permanent as opposed to deficits from surgery, who seems to mostly be recovered from.  

This said,  do NOT wait until you have serious symptoms or deficits for this. If you are feeling fine now, and you have been offered the surgery, this is the best time for it! 

Nobody can tell you to do, or not to do, the surgery. Listen to your guts!  However, you will never not have "doubts". Not with something like this. Its about making a decision, and believe in it.

I was told by Dr.Spetzler's team that Brainstem Cavernoma are the most agressive, as once they have bled, they rarely just "stop".  But there is always that chance they wont.  

All in all, both surgery, and no surgery, has pros and cons.  For me personally, I am very happy I did. Simply because I have no doubts that, as my cavernoma was becoming more and more active, I do not want to think about how I would be today, if i would still be alive at that. My last hemorrhage (which are considered strokes) affected my breathing, swallowing and heartbeat.  I am not sure what the "next step" would of been. Needing a breathing machine and feeding tube?

Anyway, there is a lot more to this than what I just shared.

Everybody is different. It is indeed very difficult to play this game. I call it a game, because no matter what choice we make, its like playing Russian Roulette.  We just dont know. We take a chance.

Knowing what I know, and seeing what I have seen, if this was my child, would I send them into surgery? If it was with Spetzler, yes.  If it was with the local neurosurgeon, no.  So, the surgeon, his expertise, knowledge and confidence, makes a whole world of a difference.   

Do not settle for what your local doctor told you.  All of us are told inoperable at first, unless we are lucky enough to have a specialist right from the start.  Be pro Active. Research and learn, and you will reach a confidence level that will enable you to make the right decision for you. 

1 comment:

  1. Did any of the cases you study had a radiosurgery after first bleeding?